Parkinsons Support Groups

I have not joined a Support Group so far. For some reason I find it easier to deal with my problems through this site rather than face to face.

However, I am beginning to wonder if I am wrong in this. I am sure Support Groups would add a different perspective to my way of dealing with things. I have always faced problems head on and suppose I am quite a private person. Maybe I should see if a Group would suit me. I know everyone is different so it would be a matter of trial and error. Of course, they may not like me!

Would be grateful for any feedback from anyone who is a member of a Support Group before I finally commit myself.

35 Replies

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  • Pros and cons. Pros - interesting guest speakers on all sorts of subjects. Information on PD nurses, welfare contacts. Common ground. Organised trips out in good weather.

    Cons - there may be people with more advanced PD such as dyskinesia and or dystonia which may make you feel uncomfortable (possible glimpe into the future?). You may have to travel some distance to get to meetings.

  • Thanks for this. I am not worried about seeing people with different or more advanced symptoms than mine. This is because I recently lost a close relative to Parkinsons. So I saw at first hand what this monster is capable of.

    Not sure where my nearest Support Group is located. Good point. Must find out.

  • I agree. I liked the speakers but it depressed me to glimpse the future. :-(

  • Hi we have a good support system and centre but I have never gone because I am afraid to see people with worse symptoms than I have

  • HI SUE

    A great tjhinig to do as everyonne is v postiive

    \if you liek mixing iwth people

    i joined hte local parkinsons group as soon s i got myi diagnos sof PSP as it wa slocall and it gets me out!

    i also discovereod that everyone is v supportive iof each other and even tho wheelchair boundd sitll contributes

    \trips out in good weather good too and i have made sokme new contacts/friends who we swop stories with

    not many on the internet as i am by far the youngest, at 66, BUT no probelm with that

    lvoe jill :-)

  • Glad you enjoy your Group. I suppose a lot depends on how the group is run and who runs it. I am not at my best sitting for long periods as I get very restless and bored easily.

    However, I will make enquiries and see what is on offer. This part of the new positive me. Don't know how long it will lasr!

    Sue

  • hi sue

    we mee tin a church hall and i am freequently moving about = goin got the loo / speaking to others/

    we do half an hour of TAI CHI Chair based exercises each meeeting /i have a massage so the time goes v quickly

    no time to be bored and i then go to a singing group (part fo u3a) in the same church

    so Wednesdays are a agood day fo rme for "gettign out" whilst i can

    PS Have just go t an ipad for converting itext to speech 4 now and in the future so must start usign it for replies here then my dyslexic typign can be corrected

    lvoe j

    jill :-)

  • You have the strangest alphabet. Or is the way it prints out a challenge to keep our brains active. Tee Hee HEE

  • I have chosen not to attend support groups so far (8yrs dx) because I see myself as ME. A person who happens to have Parkinson’s: Parkinson’s doesn’t have me (yet?). Perhaps it’s because my social & leisure activities keep me pretty well occupied & my professional PD support network starting with my GP & NHS PD team are fantastic. I appreciate that I’m really fortunate. There will come a time when I feel ready to join a support group so I thank God that they exist.

  • This is how I feel and yet part of me wonders whether I am missing out on something supportive. You are really lucky to have such a fantastic Parkinsons support team. My support really consists of six monthly visits to one of my local hospitals though I am hoping things may improve as my consultant, who I really liked, but hardly ever saw retired some time ago and I believe has only just replaced.

    I also get six monthly appointments to see Parkinsons physio and I find these really helpful. Although my physio, who I have always seen, recently retired. Is it something I am doing as the lovely receptionist also retired and one of the nurses, the one I saw, has been transferred to another hospital? Maybe the hospital unit will have closed when I next go.

  • I too am holding off from joining a group. I still feel like I am me (who happens to have Parkinsons), rather than be lumped in a group. We all will feel differently about this, and there will be a time when we may all decide we do need extra support, take care all xx

  • Ok here's my problem with the support groups, I don't seem to have a whole lot in common with people attending. I have early onset PD, I'm 46 with 2 very active teenagers. The schedules for the meeting usually conflict with my schedule, or they are too far way. The people I've come in contact with have grandchildren the same age or older than mine. The info is always geared towards the older generation. And it's always the same Oh I'm sorry you're so young.. Well I'm not saying they are bad, I'm all for the support. But I find that PD is a very personal thing. I don't feel comfortable in front of crowds, telling my problems. I'm the only one I know who has PD so If I had a support group buddy I might consider going.

  • My experience as a participant and as a facilitator is go for it, as long as you feel comfortable. Trust your gut and leave, graciously, if it does not seem to address you. I am one of those who has gkids in your kids age range. Actually my oldest is 27.

    It has been my experience that what matters more are things like political ideals, philosophical, positions, level of education. Hope this is ,at least, some help.

    Now... I would like to apply the above parameters to the Santa Fe New Mexico area.

    Oh, I have another thought, Support Group by Conference Call!

  • I have similar issues, I'm 45 with a six year old daughter. I don't feel comfortable or "one of the group." And I feel the same, PD ad its effects is very personal and unique to the individual.

  • If really want fight this disease, you must do EVERYTHING.You must do physical exercise, bicycling ,swimming,walking etc. Don't forget to search the Internet for drugs, support groups, definitions, conferences, webinars( you listen on your computer or phone to a professional speaking about your illness). You find this all on the Internet. You should go to support groups because you find out a lot of interesting information there and you meet like people. So you can commiserate and gain self-confidence.I am always finding something new.and, of course, you can find clinical trials. This helps both you and the research. Did you know that they can now change skin cells into muscle heart and nerve cells and back again? Did you know that they can create Parkinson's in mice and also turn it off again? So they can test different drugs easily.They are so close to an answer for Parkinson's. I'm not quite sure how close they are for other illnesses. This should give you some hope.

  • Thanks for your sharing your so encouraging factsab

  • Hi Court,

    I think the answers you're going to get about support groups will likely vary as dramatically as the people volunteering their opinions. All of them are right, no one can guarantee that any one SG will fit you perfectly,( just like PD and PD meds!), and add to that the fact the SGs vary dramatically as well. I run one here in our little town, and have only had a few people who thought it was not a good fit. I also belong to another support group in a nearby (30 miles) city. It has never been a real comfy fit for me. The members ages make a difference, (early onset groups do exist!) and personalities too!

    You might try out which ever ones you might find reasonably accessible just to see how good of a fit they are or aren't.

    Best wishes,

    Steve (Bisbee, AZ)

  • I went to a local support group recently and everyone was very kind and friendly, however i felt we had little in common. They were mostly older people and i am 53. I also work full time and feel like I am still me, i just have PD.

    I am sure in time I will feel ready to go back and know I will be welcomed, i guess i am not ready for that yet.

  • thank you all , im 47 and was actually advised by my support worker not to go to local group till i get my head round pd ( only month into pd) plus she thinks my positive attitude and support from familly and friends is all i need. now ive found this site i have you all,. i can ask questions here and no one judges me. everyone is positive and supportive, had a week of why me then decided. STOP get on with it,... no doubt highs and lows will follow but thats just life.... and ive a lot of it to live shakes and all x

  • Here I go, again. Having invested in all that professional education I would consider a phone chat. Not therapy but a sounding board to have someone listen as you sift and sort. jk

  • I am 44 years old and just diagnosed last June. I also sometimes have trouble sitting for long periods of time. The people in the support group get that and standing up and moving, even stretching, is not a problem. If you are young onset find a group that is specifically targeted to people with young onset. It makes a hugely important difference. The first group I went to often my diagnosis was not a young onset group and I left more depressed than I have ever been ever been despite the great kindness and warmth with which I was greeted. I'm now part of the young unset group and I look forward to it every month. Being in the group does not replace my other support networks, interests or activities. To me it's just an invaluable addition

  • Different stages and ages ----------i think maybe because when you are on sites such as this you have time to think about what you want to say , and alter if neccessary ...

    You can answer or not , if you are in a room with others it's not as easy to do this ...

    It's also a mix of ages and stages ...More relaxed you can pop in and out .

    Don't need a car or any sort of transport to get you to speak to others .

  • I joined when my husband was diagnosed. He has still not attended a single meeting(5 years since dx). I go for the knowledge I get from the speakers so I can be proactive in hubby's care. He attends the annual symposium with me. Our group has a young onset group that meets seperately from the rest first, then the speaker, then breakouts into caregivers and persons with PD. We meet once a month. I don't attend every meeting due to work constraints but I always find them helpful. They have been a great resource fo us.

  • I know right now with everything that is running through my mind I need to talk to someone! but I am not able to find a single support Group, I would also like one for my husband. The school is doing a good job with my younger daughter.

  • I got in touch with a local group withn a few weeks of dx, but couldnt go to meetings due to wokring full time, Now Im p/t and go along, but I agree that its quite scary seeing others in a worse state than me. But its been useful to chat to others and find out about whats out there & Ive made friends. Its not for everyone and Im just about the youngest (Im 60), but theyre all really friendly & the talk isnt just PD.

  • I can so relate on many issues here - I am a caregiver of a young 48 yrs old spouse who has advanced parkinson's - know I need a support group of some sort to deal with things myself - but went for 1st time last month - and they are all older woman and most caregiving for a relative not a spouse even. I felt like my situation was totally different than theirs and that I did not fit in with the group. I am in the western nys area and really wish we had more resources - or if there were a good online support group for us caregivers.

  • That's what I was thinking about, several responses ago. I might find that meeting my needs. A conference call design. gran5-

  • I am part of a support group which is for Active people with Parker's we are all of working age and have a blinkin good social life and laugh.

    We have excellent speakers not always relating to parker's.

    We are all doing really well and meet every 1st sunday in the month. It;s well attended and a good laugh

  • I drove for over a half hour to join this PD support group. While the speaker was great, I felt disconnected to the people in the group. I never went back again. I wish there were groups closeer to home and with people with whom I could better relate.

  • When I was first diagnose I attended 1 or 2 mtgs but D/T fulltime work schedule it was not conducive to consistent attendance. Working in longterm healthcare I had access to educational opportunities that involved our residents with PD and attended the local annual symposiums. Been retired almost a year now and I try to attend more ----fortunate to live in area that offers several options a month. I am still independentl;y active and some weeks can not fit a meeting in. Draw a tremendous amt of support from this site and am so grateful to have found it.

  • There is a support group in my area, I have not attended. I find the information and support on this site that I find very helpful.

    Another member of this site is in the same area, she did go and was very discouraged by what she saw, told me she was tearful later.

    We have tenatively planned to to go to the next meeting together. I will see if it is of help to me.

  • Hi Court,

    I thought I had sent this, but I just discovered it in my DRAFTS folder. (Mild cognitive impairment, short term memory loss, CRS - pick one!)

    The responses to your question about support groups cover the range from the answer my neurologist would give ( “Don’t bother. All you’ll see are old people in wheel chairs, drooling on themselves, and it will depress you.”), to the answer I would give (“What you find at a given support group is no more predictable than the progression of your disease.”) Given this, the only thing to do is to be diligent in your research and visit as many groups as you can comfortably reach, before deciding to join or not. Begin by contacting the various national organizations and ask for referrals. The NIH’s NINDS (National Institute of Neurological Disorders and Stroke) Parkinson’s Information page lists about a dozen organizations , many of which have state associations and local affiliates that keep track (unfortunately, not always current)of support groups. I have had pretty good luck dealing with my state chapter of the APDA (American Parkinson Diseases Association). If you live in a large metro area you will have a choice, and it would benefit you to visit, or at least contact, several to determine “fit” before you commit. If you live in a remote, rural, sparsely populated area (like I do), you will probably have limited choices and might have to travel an hour or two to get to a neurologist or a support group (my neuro is an hour and a half away and I am the leader of a support group which meets 45 minutes from my home). Support groups are like us Parkinsonians in that they, like us, are as snowflakes – no two are exactly alike. Also like us, they grow and change – with the addition of new members, the loss of old members, rate of progression of the disease in various members, changes in leadership, size, group dynamics, etc. The support group you reject today may be the one you embrace tomorrow (or vice versa) - either because it, you, or both, changed. In any case, you’re not making a lifetime commitment when you visit a support group. Even though you have done your homework, you may be surprised (positively or negatively) at your first visit. You heard the hoof beats and thought it was a horse, but it might be a zebra. In any case, it should be an educational experience for you.

    Cordially,

    Espo.

  • Your lucky if you have a support group in your area. I had to find out about the many issues of PD on my own. For that reason, I am starting a support group for my community in order to coordinate resources and provide education.

    I know there are many issues that caregivers have to deal with so I have started a lending library of pamphlets and videos for both PWP and their caregivers that way they might be able to get the information they need without having to attend a special meeting.

    I rounded up a nurse and I am looking to add a pharmacist to address peoples questions. I have a personal trainer that is trained to deal deal with PD patients.

    I plan on going out to the medical clinics and assisted living homes and handing out information for the medical staff so that they might recognize the need for specialists.

    So I guess that I don't think the regular same approach is the right answer. I think that I'll have to go out and change the communities way of thinking while giving people an option of what kind of support they feel comfortable with.

    Wish me luck, I hope it will work. If you live in Idaho go to IPDSG.org

  • What a task you have taken on. I wish you all the luck in the world, but don't think you will need as you seem to have some very interesting ideas.

    I would join something along these lines, but as I live in the U.K. think it is a bit too far to travel!!

  • If theres a group near you give it a look,I found it helps or feel free to join my facebook group parkinsons ride ,take care be strong

    mark

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